Category Archives: Bone marrow transplant

Life in an RV (a fifth wheel, really)

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We got all set up on Wednesday in extreme heat and I felt really bad for the owner. He was sweating a lot and it was 100 at least. It did take a while to set all the things but I’m quite comfy now.

Yesterday and today and tomorrow are supposed to be red flag days in Sacramento and it is very breezy/windy. The temperature yesterday was lovely at 83 or so but by Monday we are in for 105. So very hot!!!

I’ve been going over to the hospital twice a day. It’s almost a mile so yesterday I walked over in the morning to check it out and it wasn’t a bad walk at all as long as it’s not 100 degrees. I also was very brave and figured out the shuttle back and forth. It doesn’t run on weekends so I’ll drive over to the parking garage today.  The parking is $2.00 an hour and it goes by the top of the hour. So even if I leave 15 minutes to the hour I get charged that $2.00. It’s all good though. It’s averaging about $10 a day. And Thank you, GoFundMe donations:)

So B’s numbers are all in the normal range. But he has had a few setbacks which have delayed getting released.  First, he is retaining fluid and that caused pressure on his lungs and heart. They had a cardiologist come in to check and he had an echocardiogram. Also, his blood levels of an enzyme they check for heart attacks was slightly elevated, but the doctor said that was due to the fluid around the lungs.  Also, his blood pressure was too high and they started him on another medication to help with that. It has since come down to a good range. Now the biggest problem is he is not peeing and they have had to catheterize him to get urine out. So until that gets resolved, he’s in there. It’s frustrating but it will all be good soon enough. He has one appt set for next week already at the clinic if he’s out. So fingers crossed he starts peeing!!!!

Overall, he has done amazing and this is just a small setback.  These doctors and nurses are truly amazing and anything at all they are on top of it.

My daughter came down on Friday and we went to Trader Joes and picked up groceries and it was fun to get out and see this neighborhood. The houses were stunning. These are not small bungalows but huge mansions. I still don’t know the name of the neighborhood but I’ll check.

The one nurse did say that going home earlier(from the RV) should be an option for us as we are really close enough to get here for appts 4 times a week and if there was an emergency. So I am going to talk with the nurse coordinator about that so she can talk with Dr. Abedi. I don’t want to just go home immediately but as soon as it seems things are holding steady, I will.

 

 

 

Quick update

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Today the RV gets moved to the Kiwanis House Rv area. I’m excited in a way as it will reduce driving and simplify things for now.

On absolutely incredible news, Barclay is engrafting and his numbers are going up rapidly.  He still feels lousy and of course, the real fatigue is about to hit him but at least the numbers are doing what they are supposed to.

The doctor indicated he may be released as soon as this weekend which is way ahead of what I thought so that too is incredible. Then it will be clinic visits daily then it will taper off and I’m guessing his doctor will release him to come home. It’s still a long road but there is light at the end of the tunnel.

I’m trying to get everything packed up this morning including some food so I don’t need to go out later in Sacto to get something. Tomorrow I was planning to go to the Trader Joes nearby and get a few things.IMG_0636

The hat is too cover up his now bald head. His hair starting coming out right on schedule (day 10) and so it was shaved by one of the incredible nurses.

 

The week ahead…

Posted in Bone marrow transplant, camping, decluttering, Flylady, home improvement, home stuff, minimalism, Uncategorized, White space by

We had a quiet Memorial Day.

My brother died in Viet Nam in 1968 so I thought about him. He was a talented artist. What a waste. He also couldn’t get a deferment even though he had a heart problem and at that time was working full time to support my mother. I guess Donald Trump got the deferment for his bone spurs. I guess he had enough millions to pay off a judge. Well, I guess that tells you something about my brother being killed in Viet Nam and  Donald Trump whining about a bone spur.

It was cloudy to start but then eventually the sun came out. We BBQ some burgers and I made some coleslaw. My daughter made us some strawberry shortcakes for dessert later.  We generally don’t eat dessert so this was a nice treat.

I didn’t drive to Sacramento and missed seeing B. But I’m going down today and all the rest of the week except Friday. I think my daughter will go on Friday unless her new job starts. Her library interview is next week and this job she is doing is only temporary thru June.

Everything is lining up for us to have the RV. I just ordered some camp chairs as I don’t want to use the owner’s ones for risk of them being stolen or damaged. We needed new ones anyway.

Flylady zone this week was the living room. That’s an easy one for me as it is almost where I want it with functionality and minimalized. I try and do one thing in each zone that’s new or improved. So this time I moved the Ikea cart out and put it in my office area. It holds our wine bottles( which have been reduced to one Chianti, that we don’t drink very often) and we kept our silverware in Ball jars there too. So, I’m going to try it and see if we NEED it back or can the space just be open( white space). I guess we shall see. Right now in my office space, it has a plant on top and that’s it so, that probably isn’t very efficient either.

I’m planning on going to Sac Co-op this morning for veggies and olives from their olive bar. But it kinda depends on my mood as I get closer. Nothing is critical that I need so we’ll see. (How’s that for being indecisive??)

Dinner is chicken enchiladas!

Saturday stuff

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It has been quite the week!! We had the transplant the morning of the 23rd and it is( for those who have been thru an SCT) fairly uneventful. Even anti-climatic except it is the beginning of a new life which is pretty monumental. But it is just a drip for however many hours. Mine was very short ( an auto) B’s was almost 4 hours!!

Well, we are now on day +2 and he’s been in for 9 days. So soon he will go down to WBC of 0 and then it’s a waiting game. At this point is when you start to feel awful, no appetite, diarrhea, and absolutely NO energy. Because his is an allo, the risk of infection and graft vs host is much more present.

Today I’m going down with my son and then tomorrow I’ll take my brother if B is up for it. He said he was starting to not feel great so visitors are usually the last thing you want.

On a different note, I’m working on taking a few things out of the bedroom and closet. I have some empty bins I need to put in the laundry room and  I wanted to move a plant to a different spot. I’d like to take out the suitcase I have a plant on but I’m not sure where I’d put it. It has mementos for both of my children like wood toys and other things.

I’ll just have to look at it more closely. I thought I’d like to mount the wood crate on the wall and then that would eliminate the need for the suitcase which the wood crate is on top of.  That has a plant and a salt lamp on it.

It’s cloudy again today and cool. Tomorrow it’s suppose to rain:( again.

Day 0, this is it!!!

Posted in Bone marrow transplant, MDS, Uncategorized by

Well, the brothers stem cells are here and transplant will take place this morning.

It was scheduled for 2am last night but there was a delay for some reason.

But he is ready to go!! The melphalan really hasn’t kicked in yet but should by this weekend.  Also, the nurse said a fever is common when engraftment takes hold so we can expect that too.

They changed his room to a more isolated area with double entryways. But it really is a lovely room. It’s large with a table and 2 chairs, a lounge chair, and a lovely view. The windows are clean as opposed to the other room where the window was visibly dirty on the outside. UNADJUSTEDNONRAW_thumb_379.jpg

He still has his hair probably till next week when it will need to be shaved. But all in all, doing well.

 

Day – 2 and counting…

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Well, he is still smiling and the hair is still there. He did get the Melphalan yesterday so it’s only a matter of time now that he’ll start to feel awful.

He gets another dose today as well.

But he is eating well for now which is great.

I’m still working on the insurance stuff with him going on Cobra and waiting for a callback.

They did send him an email but he can’t seem to find it right now.  But I’ll follow up tomorrow if I don’t get a callback today.

I’m heading down this morning after I do a few things.  It’s just me this morning and then tomorrow Sachi will go down. Tomorrow is D -1 so almost there.

Simple Sunday

Posted in Blood test, Bone marrow transplant, cancer, Flylady, Multiple myeloma, Uncategorized by

Today is another trip to the hospital but before I go down I will try and do my Flylady zone.

It’s the bedroom so that is generally not too involved. I did call a house cleaning service to check on a ‘deep’ clean and I’d like an estimate. If it’s reasonable I’ll schedule that for the first week of June.  Since sometime after that we will be down there at the RV spot( I hope).

There’s been a hiccup with that as the owner has had a medical issue come up. I sure hope it can be resolved but it is what it is. And his health comes first. We still have the ACS hotel as back up. We can’t book that though till we know the exact date, so it’s also hurry up and wait.

On another note, my labs came back and I’m not going to lie. It upset me. They went up 4 points out of normal range. 18.4 to 22.4. So 19. 6 is high normal. And the ration went up to 1.69 out of normal range. (1.68 is high normal). so there it is. I’m guessing I’m coming out of remission.  I’m not going to worry too much yet as it’s still a long way to treatment.  It could be 3-4 months maybe longer but clearly, myeloma cells are activating.  It’s fine really. I knew it would happen and I’ve had 3 great years. Still, with everything going on it’ll be another trial. I actually see my oncologist this coming week( yes, I know in the middle of everything else) so I can ask him. He doesn’t get too concerned as the increases have been slow.

Anyway, life goes on, one way or another.

 

Day -4 and counting

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Today went well.

My son, Zephyr, and I went down @ 10 am, and it was nice. No traffic backed up.

Today was his graduation day from Sacramento State but he wasn’t planning on going.

he spent the entire time setting up a Spotify account for his Dad and Hulu. So entertainment wise he’ll have lots to do. He also ordered a wifi speaker from Best Buy and we will pick it up on the way home.

He was in good spirits since chemo doesn’t really kick in for about a week.

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We’re heading down around 10 am again and will stay for a while. Tomorrow I’ll go alone as we need to call @ the Health care changes since open enrollment starts tomorrow and we’re not sure how that will work. Someone is supposed to call us but I’m not holding my breath and I’ll check back with them.

A change in the weather.

Posted in Bone marrow transplant, home improvement, home stuff, simplicity, Uncategorized by

Over the next two weeks, it looks like rain and cool temperatures. I get so used to it being like 75 or high ’70’s that I forget its still only May.

Still, we usually have all the coolers in the windows by now.  B only put the living room one in and then our son or daughter will have to do the rest when B is in the hospital. But it looks like it’s going to stay cool all the way to Memorial Day. Our yard does look it’s best this time of year with all the roses, and perennials blooming.

A couple of projects are done. One was to paint the french doors( that we got free many years ago) Behr’s Ultra White. The hardest part was taping all the squares. Still, after 2 coats it looks fresh and clean. I must have painted one set before as the second coat on that set looks better than the other doors. But after 2 coats I was done.

Next year I can do a fresh up. Then B fixed one of the sunroom windows that actually is on a hinge to open for circulation. But it had some water damage and didn’t open so he took it off and rehung it.  Cool!!

We also touched up the bathroom paint and it looks good enough I can hold off painting the whole thing till next year.  In the past, I’ve tried to paint each room or a few rooms on rotation.  But not this year.  One thing though, going to a whole house inside color ( Benjamin Moores Simple white has been great.

Today B has a CT scan of his sinuses that they forgot to do in the last CT scan.( ah really?? forgot??? Then we have a load to take to the food bank.

And we’re on count down to Friday:(

Friday things

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So we are ready to go. B signed the consent forms yesterday and admission is next Friday. That’s only one week away. After listening for 45 minutes of every terrible thing that could go wrong we signed.

He will go in at 9am admissions, have a main line put in or a pic line. At this point, it looks like a pic line since his platelets still have not gone over 50. They hover in the ’20s and then drop into the low teens and that is too low for surgery for the mainline catheter.

Then Friday is D -5 for chemo, down to Day 0 which is transplant.  The chemo is supposed to be well tolerated but since I had melphalan  I’m not too sure I agree with that. There are two other chemos involved as well.

So, it begins. Probably the recovery will be the worst part with fatigue and the constant threat of graft vs host disease.

We stopped in the co-op for a quick shop and it was slightly more expensive than I’m used to I may have to use it to buy the things that are better priced such as bulk items. We did have a lovely lunch though and got to relax before heading over to UCD med center.

We got in another co-pay bill for $1680 that’s for all his transfusions. I’ll call this morning to make arrangements for payments. We paid off one and so with this one we’ll have two. All together that will use @ $4500 of the GFM but I’m stretching it out. Actually, I think it’s more like $5000 but still, over time it’s doable. ( As long as too much more doesn’t show up.) But we still have the transplant co-pay which is still unknown but we know it’s about $6000.

Well, I’m just not going to worry about it now.

Today, I’m off to get my labs for my Thyroid as I’m overdue. Then to pick up my new glasses that hopefully have been corrected. From there I may hit the gym and I need to go to the bank.  Yesterday was super long and so I usually drag the next day.

I’m hoping to not go anywhere tomorrow or Sunday and I’m willing to give up my Sunday workout just to stay home. I’ll be driving to Sacramento almost every day starting next week.

UNADJUSTEDNONRAW_thumb_374.jpg This our Cecil Brunner rose all out for Mothers day!!